Hi
Just an update. After seeing the Macmillan nurses a couple of weeks ago and given the news I had carcinomasarcoma which is a grade 3 cancer then being told I would need full abdominal hysterectomy plus Radiotherapy and possibly Chemo I then had an MRI scan. I nearly freaked out when told it would be 45 minutes long but the Radiographer said "You really really need this scan" so I took deep breaths and got on with it. Was'nt so bad after all. I was supposed to have a CT Thorax a few days later but this was cancelled with no explanation and the promise I would get another appointment this week (not happened). Can't call them as they are not taking calls. I rang the Macmillan Nurse to make sure I would still be discussed at MDT even without the CT and she rang back and told me I had indeed been discussed but they didn't have an appointment with a Gynaeoncologist for another 4 weeks so I am going to see the Gynaecologist that did my hysteroscopy instead next week and he will go through the details of surgery and consent me. Hopefully I will get a date in August or possibly beginning of September. I was quite horrified and pointed out I had my TV Ultrasound on 4th May which showed up the cancer and it seemed far to long to wait until September. I said I was so worried that all the waiting would lead to it spreading. She then asked me what he Macmillan Nurses had told me (this was one I had not seen at my previous appointment). I told her and she said well the MRI isn't really clear what kind of cancer it is but it does show it is contained in one area and has not spread upwards but we know you really need to have this out so we can see exactly what it is. As for the CT they are confident that it will not show anything in my lungs.
I am reassured by what I have been told and the possibility that it isn't as bad as I first thought but I know this could all change on this rollercoaster journey. Really just want next Tuesday to come round quickly so I can actually speak to a Consultant and find out more. I still find it weird that I was fine before the hysteroscopy but ever since have had the groin/top of the leg pain which has not eased at all and means I can't carry on as normal as I can't walk far. I used to go for a run a couple of times a week, go to the gym and walk everywhere so not good at all. I always believed that if you had cancer things would move along quickly but it seems to depend on where you live as from reading other people's stories on here I know some have been sorted a lot quicker.
Hi
I've read your profile and glad to see you are doing so well. I had the odd days when I had a feeling like my knicker elastic was tight around my right leg and like you wonder if this was the start and I could have caught it earlier but also like you I was active so just didn't associate this with anything going on in my uterus, why would I
. The only thing that rang alarm bells was the spotting which then turned to light bleeding. I'm still bleeding and suppose I will until this "thing" is removed.
Jkg
Hi Jkg
My cancer was carcinoma sarcoma too. It seems to be one of the rarer ones. There are a few grade 3 ladies on here and I have seen a couple with a similar diagnosis. Most of the grade 3 cancers seem to be treated in a similar way. Surgery plus follow up treatment that depends on the stage. My actual grade and stage was confirmed at the post surgery pathology and as your nurse has said sometimes the scans can not be really clear so things can change. It is reassuring that it seems to be contained in one area.
Well done for doing your MRI. I didn't have one and I must admit it was a relief as I feel claustrophobic even with the CT scans- which is not great! I was given a full CT scan a few days after my biopsy so found things moved quickly for me. I am sorry that you are having to wait and it must be a real worry.
I hope that your appointment on Tuesday goes well and that you can be given some reassurance about when your surgery will be. I found it helpful to write a list of questions for the appointment and it might be something you would want to consider. Make sure you tell the consultant about your pain since the hysteroscopy and how it is affecting you day to day life. It sounds like you were keeping fit before this happened so that will definitely help with your recovery.
If there is anything we can do to support you please do let us know and keep us updated. Good luck for Tuesday
Jane
